Rep. Lance Agrees To Cosponsor ABLE

Lance Cosponsor ABLE Tweet

Update for persons receiving DDD services who do not currently have Medicaid – from The Arc of NJ

I was forwarded this message (dated 02/27/13), which originated from The Arc of New Jersey.

Dear Colleague,

As you probably know, DDD regulations have changed, and everyone age 21 and older who is receiving DDD services must have Medicaid to continue to receive these services. Information will be distributed very soon about two free Webinars, hosted by The Arc of New Jersey, focusing on Medicaid eligibility. The Webinars can be accessed from one’s computer and/or by phone:

Medicaid Eligibility Webinar Part 1 will be broadcast on Tuesday, March 5, 2013 at 6:30 pm. One of the panelists at this Webinar will be Liz Shea from the NJ Department of Human Services.

Medicaid Eligibility Webinar Part 2 will be broadcast on Monday, March 11, 2013 at 6:30 pm

This update is intended for families, legal guardians, and other caregivers of individuals receiving DDD services who do not currently have Medicaid. The information in this e-mail is not applicable for DDD consumers who already have Medicaid.

DDD is tracking the progress of caregivers who are working on getting Medicaid for consumers who receive DDD services. DDD is requesting that caregivers contact DDD by March 1, 2013 to let them know the status of their efforts in the Medicaid eligibility process

When caregivers provide DDD with an update on their progress with Medicaid eligibility, this is what they should include:

Consumer’s name and address
Date of birth
Brief status update. For example: Have you scheduled an appointment with your County Board of Social Services or with the Social Security office? If yes, what is the appointment date? Did you recently complete a Medicaid application at the County office? If yes, when was that appointment? Have you scheduled an appointment with an attorney to discuss a special needs trust? If yes, when was that appointment?

The best way for caregivers to let DDD know about their Medicaid eligibility progress is via e-mail, to this address: There is also a phone number for this purpose, but there have been so many phone messages that the voice mail box is often full (even though messages are taken off the machine often). Therefore, DDD is requesting that this phone number be used only by people who do not have access to email: 609-631-6505.

DDD consumers who are not eligible for Medicaid:

DDD recognizes that some consumers who are receiving DDD services are not eligible for Medicaid under the current Medicaid regulations, through no fault of their own. For example: Consumers are not Medicaid eligible if they started to receive a Social Security Disability (SSD) check greater than $931/month (based on their parent’s work history), because a parent retired, became disabled, or died, and the SSD checks started arriving before the consumer started to receive Supplemental Security Income (SSI) from the Social Security Administration. In circumstances such as this, there are two ways to provide a status update to DDD:

If a consumer has applied for Medicaid and was determined ineligible within the last six months, you can either scan and e-mail the ineligibility determination letter to DDD at, or mail it to this address: Attention: Medicaid Eligibility Project, Division of Developmental Disabilities, Central Office, P.O. Box 726, Trenton, NJ 08625-0726, or
The caregiver can complete either DDD’s troubleshooting form or The Arc of NJ’s Medicaid Eligibility Problem Form (the two forms are very similar) and e-mail the form to (preferred method), or mail it to the DDD address above. The two Medicaid forms are attached to this e-mail.

Even if a consumer is not currently eligible for Medicaid, the family should address the issue of excess assets, if applicable. DDD personnel are going to try to have this group of currently ineligible consumers become Medicaid eligible, and they want to be certain that they won’t have to deal with assets as a barrier. See also the paragraph below.

If the consumer’s assets exceed the Medicaid eligibility maximum:

If consumers are not Medicaid eligible because their assets are above the allowable Medicaid limit, the caregivers must determine how they will deal with this problem because those assets will jeopardize the continuation of the consumer’s DDD services! In these cases, families are advised to seek the advice of an attorney with extensive experience in developing a special needs trusts for persons with developmental disabilities. Please note: An attorney will be speaking about assets above the allowable Medicaid limit at The Arc of NJ’s Webinar on March 11th at 6:30 pm.

Please share this e-mail with others who may also be interested. Thank you!

Regional Family Support Planning Council #6 Public Forum and Providers Fair Scheduled For March 14, 2013

Regional Family SupportRegional Family Supprot Plannign Council  Planning Council #6 (Monmouth and Ocean Counties) is a group of voluteer family members who  host public forums to obtain input to improve family support services provided by the Division of Developmental Disabilities.

The Regional Family Support Planning Council #6 Public Forum and Providers Fair is scheduled for March 14, 2013.

Click here for the flyer with information on the event.


For DDD consumers who do not have Medicaid: Options for Achieving Medicaid Eligibility

This email originated from The ARC of New Jersey.

As you probably know, DDD issued new rules last month, requiring all persons 21 and older, who receive DDD services, to be Medicaid eligible.

The attached article titled, “Options for Achieving Medicaid Eligibility for Individuals with Developmental Disabilities,” was prepared by Hinkle, Fingles & Prior, Attorneys at Law, to give families a better understanding of the different categories of Medicaid. Also included in this article is a section that addresses individuals with developmental disabilities who have financial resources above the allowable limit to receive Medicaid.

Read the Options For Receiving Medicaid Eligibility article

Bill Addresses Innovation in Housing Options for People with Disabilities In New Jersey

News on Bill (S-254), which was released on Monday by the Senate Health, Human Services and Senior Citizens Committee.  The bill seeks to expand housing options for persons with autism and other developmental disabilities.

Bill Addresses Innovation in Housing Options for People With Disabilities in New Jersey

State raises concerns that Medicaid may not pay for proposed housing options

From NJ Spotlight, by Andrew Kitchenman

To read the article on line click here

The families of adults with autism in New Jersey are urging the state to take a more flexible approach to housing at a time when thousands of residents with developmental disabilities are on a waiting list for placement.

That flexibility is one of the goals of a bill (S-254) released on Monday by the Senate Health, Human Services and Senior Citizens Committee.

The legislation would require the state to explore new ways to deliver services to adults with autism and other developmental disabilities.

Autism advocates say the bill is a vital step toward averting a housing crisis. There are nearly 5,000 New Jersey residents with developmental disabilities on the priority waiting list, and the state is expected to see a surge in the number of adults with autism in the coming years.

According to Leslie Long, director of adult services for the national advocacy organization Autism Speaks, “There are going to be 500,000 individuals over the next decade that become adults with autism,” Long said of a national increase. Long continued, “You’re going to have huge number of adults who are in need of housing supports.”

But New Jersey officials have expressed concern that the bill could endanger the state’s Medicaid funding because federal regulators won’t approve the suggested housing alternatives.

Right now, autistic adults have one primary option: community-based housing in which they share a group home with residents who are intellectually disabled. But families are concerned that adults with autism receive an appropriate level of care geared to their specific needs.

The bill posits several alternatives, including three highlighted by supporters of the legislation.

The first would allow a family to buy a house for an autistic adult. When the family gets to old to help care for that adult, the state would take over the house and the autistic adult would be able to continue living there.

The second approach would establish assisted-living facilities with individual apartments for autistic adults: 24/7 care would be provided by the state.

In the third approach, an adult with autism could live with a host family, not unlike a foster family.

Maria E. Fischer, whose 19-year-old daughter has autism, said parents are hesitant to help their children live on their own because they are concerned that the state won’t support this environment for their children in the future, moving them instead to a communal setting. Fischer added that when adults with autism continue to live with their families, it “undermines the individual’s sense of independence and self esteem.”

While Fischer said families like hers could buy a home for their adult children, it is difficult to do so in the absence of an assurance from the state that it would provide services at that home when the services are needed in the future.

In Fischer’s opinion, this option could save the state money because adults like her daughter may not need to rely on state services early on since their families could support them longer.

Other autism advocates point out that the state would financially benefit from having the families donate their houses to the state, an approach that isn’t allowed under current law. “It’s time to fix the housing crisis for persons with developmental disabilities in New Jersey,” Fischer said.

Adam Strauss-Goldfarb, a 17-year-old whose 21-year-old brother has autism, said the state lacks choices for adults who have a constant need for services outside of group housing. He said that the state should explore public-private partnerships to fund assisted-living facilities.

Another potential residential option that advocates favor is for the state to fund host homes, in which adults with autism live with families other than their own.

There is another concern the bill could address: transportation. The question is how does the state reimburse families who bring adults with autism to the requisite facilities. New Jersey has a limited number of providers approved to transport adults with developmental disabilities, but some residents don’t live in areas served by the providers. Thus, they’re responsible for supplying transportation themselves.

Sen. Robert M. Gordon (D-Bergen and Passaic), the bill’s sponsor, said that if the state had more flexibility in how it delivers services, it would be in a better position to address the demand for residential placement and other needs.

Sen. Dawn Marie Addiego (R-Atlantic, Burlington, and Camden) noted that Gov. Chris Christie’s administration is concerned that the bill would ratify residential housing arrangement that could endanger federal funding.

An aide to Gordon said he is working with the administration officials to incorporate their concerns into the bill. Addiego voted to release the bill from committee, but said she reserved the right to vote against it when it comes to a vote in the full Senate.

Robert Titus, public policy director of the advocacy organization Autism New Jersey, said the bill would send a message to state officials. “The bill is a statement on your part that the resources of the Division of Development Disabilities can and should be used in a way that is innovative,” Titus told committee members. “This bill doesn’t mandate a particular service but it does mandate being smart” in seeking different solutions to a difficult problem.

Long called the bill “an exciting piece of legislation” that would explore options for the hundreds of thousands of adults with autism who are in need of being placed in a home that would provide needed services.

“Residential supports in adult services could have a waiting list for years before they’re going to have any kind of public support,” Long said. “There is a huge waiting problem.”

Long also said that government officials must become more creative, since the demand for housing is far greater than the supply. Without government action, families are pushing the issue to the forefront.

In addition, Long noted that autism advocates disagree that the federal government has ruled out Medicaid funding for new housing arrangements.

The federal government has an official policy of encouraging developmentally disabled residents to be integrated into the community as much as possible rather than being institutionalized in settings devoted to a specific need. But Long said the government hasn’t put a limit on the number of adults with autism who live together.

“In this economy,” Long said, “we have to leverage whatever kind of public and private partnership we can.”

Long said the bill is helping advance public discussion of the issue and could lay the groundwork for further progress.

“This conversation could be a model for the rest of the country, because this particular dialogue needs to happen in every state,” she said. Advocates for autism services, according to Long, differ as to whether the government should strictly define which community-based residences it will fund through Medicaid or whether it should instead emphasize the choices made by residents with autism and their families.

“This bill is actually a couple of years ahead of itself, which is nice,” Long said, adding, “This conversation needs to happen.”

NJPA 2013 Providers Fair/Conference Scheduled For March 16

New Jersey Parent Advocates Inc.
2013 Providers Fair/Conference
Saturday March 16 2013 9:00 AM to 4:00 PM

Register here.

CHOP Trisomy 21 Symposium Registration Info

Rec’d from the Trisomy 21 Program at CHOP.

Please join us for the ninth annual

Trisomy 21 (Down syndrome) symposium

Saturday, March 16th 2013

At The Children’s Hospital of Philadelphia


Click here to register 

The registration form and program brochure can be accessed through the CHOP CME website at:

Parent and Professional Training Opportunities: Pathways to Adult Life and Career Planning and Readiness Conference

This email was sent by The Family Support Center of New Jersey and Family Resource Network.

The Family Support Center of New Jersey and Family Resource Network are excited to host training opportunities for students, families, and professionals who support individuals with intellectual and developmental disabilities. These trainings are provided in collaboration with system partners to offer the most current and accurate information during the transition years into adult life.

Please follow the links below to register. We encourage you to distribute the attached flyers to any family or professional that may benefit. Thank you in advance for your support in sharing this information.

Career Planning and Readiness Conference

Hosted by The Family Resource Network in collaboration with the NJ Chamber of Commerce Foundation and NJ Department of Education Office of Special Education

Date & Time: April 11th, 2013; 8:30 AM to 2:30 PM

Who should attend: Education and Supported Employment Professionals, Young Adults with Disabilities and Family Members

Location: Mercer County Community College; 1200 Old Trenton Rd, West Windsor, NJ 08550

Participants at the conference will receive an introduction and FREE trial to
This is a teaching tool which simulates a company website that provides opportunities to complete job applications and take pre-employment tests and surveys. It is a critical aspect of employment as businesses move more and more of their hiring processes to online applications.

Supported Employment Provider Marketplace:
Supported Employment Providers have been invited to set up resource tables, share information and answer participant questions.

Please copy and paste the link below and proceed with payment to register for the conference. Registration includes the cost of breakfast, lunch and conference materials. Registration is free to young adults with disabilities, and scholarships are available to family members. Please complete a separate registration form for each person attending. Space is limited. Registration deadline: March 25th.

Pathways to Adult Life

The Department of Education and The Family Support Center of NJ invites you to a transition education and information session!

Pathways to Adult-Life is a training developed specifically for professionals and parents who are working with high school-age students with intellectual and developmental disabilities (IDD) and will require adult services upon exiting the school system. This training is developed in collaboration with the Division of Developmental Disabilities, Department of Children and Families, Division of Vocational Rehabilitation Services and the Office of Special Education. The content of the training will provide specific information regarding the timing of referral, eligibility determination process and the range of service options available through the state agencies for students upon graduation.

This one-day training session is being offered to professionals and parents. Each session can only accommodate 50 people. Participants are encouraged to register as soon as possible. Each session will start at 9:30 am and conclude by 2:30 pm. There is a $15.00 fee that includes lunch and training materials. Education professionals are encouraged to identify parents that would benefit from the training.

Follow the link below to register or call the Family Support Center of NJ (800) 372-6510 for additional information. Space is limited. Registration is required:

Dates & Locations:
Monday, April 29, 2013 9:30 am – 2:30 pm
Learning Resource Center – Central
200 River View Plaza, 1st Floor, Trenton, NJ 08611

Wednesday, May 1, 2013 9:30 am – 2:30 pm
Learning Resource Center – North Satellite
104 The American Road – Bldg. 100, Morris Plains, NJ 07950

Friday, May 17, 2013 9:30 am – 2:30 pm
Learning Resource Center – South
South Jersey Technology Park, Samuel H. Jones Innovation Center – Suite 200 (2nd floor)
107 Gilbreth Parkway, Mullica Hill, NJ 08062
For GPS purposes enter: 700 Mullica Hill Road, Mullica Hill, NJ 08062

Updated Rules On Medicaid Eligibility For DDD

This email came from The ARC of New Jersey.

Attached is the DDD final rule requiring everyone who receives DDD services to be Medicaid eligible.

Click here to read the final rule.

The Arc of New Jersey is very concerned about this new DDD mandate.

We developed the attached Medicaid Eligibility Problem form as a helpful tool:

(1) to determine what the problem is for DDD consumers who should be able to become Medicaid eligible, so they can receive Medicaid services, and

(2) to identify those DDD consumers who will NOT be eligible for Medicaid, through no fault of their own, so we can advocate for them to continue to receive DDD services.

The ARC of New Jersey has stated they want to receive the completed form of any DDD clients whom you think will not be eligible for Medicaid, so The Arc of New Jersey can advocate for them to continue to be served by DDD.

Click here to download the form.

Special Needs Trusts Overview Article

I received this from a Special Needs Financial Services Planner at MetLife.

I constantly get questions on SNTs, the types, how they are used, etc. Attached is a wonderful article prepared by our Advanced Markets team that gives a pretty thorough overview of these complex documents and other special needs planning topics.

Click here to read the article.